PLEASE READ THIS

[merl1n]

Like many OSA members, I use pot medically. I use it for a condition that will eventually kill me and I know that. I have a will and I'm an organ donor. I thought this was about all I needed to have. I am about to tell you a story, a true story of a woman who passed away last week from brain cancer.

 

She was diagnosed 3 years ago, after having a siezure, with a glioblastoma or a grade 4 brain tumour. She was given 11 months to live and told the Dr's to 'piss off 'I want to be around for my granddaughters first day at school' at the time the granddaughter was 3. She had surgery, radiation and chemo (and some of my medication ), which worked for a while. About 9 mths ago she started having problems walking. She returned to hospital for a MRI scan, it was not good. She returned home and her family nursed her in the home. The family spoke to her of her wishes but nothing was written signed nor witnessed. Approx 2 months ago she was admitted to her local hospital after losing all mobility.

 

From here the medicos took over and made all decisions, there was some consultation with family but mainly around the progression of the disease and not much about treatments or processes. She was very aware of her surroundings, the tumour had attacked her cerebelum affecting motor skills and speech, but not the mind. She was still there. She lost the ability to swallow and the dr ordered nil by mouth. She had no drip for fluids, nothing. The hospital staff left her in a room with other patients who were eating in front of her, she could see it, smell it. But was not allowed any. A family member complained to the nursing staff and to shut the the family up the staff placed a sub cutanous (under the skin)drip in and not intraveinous IV or in the vein (a higher rate of fluids can be given IV). The average person needs 100ml per hour, more active 125, older 80, IV. They also need sugars or glucose but her drip was saline(salt water)and at 40ml/hr.

 

The hospital were strongly informed of her wishes and the family were asked for the paperwork, what paperwork. This woman was not in a palliative care unit with specialist nurses, just the surgical ward with general nurses. She needed strong opiud painkillers everytime she was moved and at first they would give the meds and 10 min later come and wash or move her. But then came new nurses with no idea. There was very little care taken at all the injection would come and sometimes 45 minutes would pass then they would need to give her more, before moving her, as the effect had worn off and family saw them move her 'a bit like moving a sack of potatoes'. All this time she was aware but unable to communicate with words. The nurses would come in and ask 'Are you in pain dear?' but she couldn't answer. 'well if she can't answer we can't provide' Her face was beetroot red in agony and yet they had to ask. The family told the nurses how to tell. Towards the end the family, who by this time were at the hospital 24/7, were telling the nurses when to give her more, she needed more although she was having meds pumped into her constantly via a battery pump.

 

This woman did not want to die, she fought it all the way. The death certificate says she died from the cancer but after 38days of no food and less than adequate water (let alone medical care) she died from starvation in my view. If she had been given nutrients she would still be here, if she had been given a gastric tube for food she would still be here, she was still aware up until 5 hrs before she passed. I have seen 5 people pass away previously but in these circumstances, their mind was gone. This woman couldn't speak but she could still communicate, her mind was still there and she was still fighting.

 

The hospital would not listen to her wishes via family and although she did have things written in her will. This was open to a broad interpretation ie 'to die without pain' interpreted as 'High on painkillers and starved to death'. I don't think so.

 

Now I am not writing this down as ammunition against anyone, but people need to know. What to do, how to do it to make sure that your wishes are followed. Talking about it ain't enough. You need documents, signed witnessed documents.

 

So, Ive looked into this a bit cos this shit ain't happening to me nor my loved ones. The torment is indescibable.

 

Here is what I've found:

They are called Advanced Directives. There are two sorts, one called a 'Living Will' and the other is a 'Enduring Medical Power of Attorney'

 

ONLY HAVE ONE SIGNED AND WITNESSED because they may conflict with each other under interpretation

 

The living will is basically what this woman had. Her will had some directives but their interpretation was wrong from the family's view but the Dr's had the say and proceeded.

'Enduring Medical Power of Attorney' gives a loved one the authority over the treatment. This only applies if the person themselves is unable to have that authority themselves.

 

Now you can go to a lawyer and have either of these documents written up professionally, for a price, often recommended if there maybe family fights over who has the say (or the biggest mouth)and a lawyer will know all those big words and know how and when to use them. Another option is to call the Cancer Council (131120) and ask them to send you the information. Fill it out and go to your legal aid and ask. Another option is that the law society offers free 1/2hr legal advice in most cities. Both documents need to be signed and witnessed to be valid, you can't just write it up and leave it in the bottom of a drawer somewhere, it must be witnessed.

 

Now here is what I've done. I have a will, I also have a MEDICAL ONLY living will, written up, that my wife has, but not witnessed. This means my wife has written proof of my wishes, but it is not a legal document until witnessed. My wife also has 'Enduring Medical Power of Attorney' signed and witnessed. She has the say. No other family member can object she has the power and it is her interpretation that counts. I also have signed witnessed authority giving her full and unfetted access to all documents pertaining to me. She may not understand all of the information but she can take it for another opinion or clearer explaination.

 

I was a supporter of euthanasia, now I am an advocate. If you starved an animal you would be charged with a criminal offence, but a person it's OK. That my friends is WRONG

 

If anybody has further information around any of this please let us know.

 

By the way that woman did get to see her grand daughters first day (and year) at school. And by christ did she put up a fight she was always a stubborn, determined bitch and I can only hope that when my time comes I can be half as strong stubborn and determined as she was.

 

Rest in Peace RS

Always loved. Always remembered

 

Merl1n

[Burnz]

Sorry to hear mate.. and thats fucked about the medical staff...

 

RIP

[brick]

Deepest sympathy merlin.

 

Don't know what state you are in.

 

The medical staff that were looking after my wife when she had ovarian cancer was the most professional and sympathetic caring I have ever witnessed. They never let her lose her dignity, always listened to her and always answered any questions we, she or I asked with answers that were honest without being harsh and hurtful. Although different cancer, I had a mate die of brain cancer 4 years after diagnosis and his care was just as professional and sympathetic. One of the staff even came to my wifes funeral.

Mercy Hospital Heidelberg Victoria.

 

Beggars belief that because somone who is dieing of cancer basically gets put in a corner and left alone. Fucking makes my blood boil to hear stories like yours.

[smashed1]

thats sad merlin, my mum was in liverpool hos the fukers! she had late stage breast cancer an she was ridlded in bone cancer an she was that off her head shed just lay there an the stupid nurses left the side rail down one night an found her on the floor later with shatterd bones all over the place an one side of her face was black as, coulp nights later it hapend again an that was prity much the end of her.

 

then a couple years later an herd on the news that the nurses at LIVERPOOL hos were taking the opiots so that explaind alot an wen you would viset wen you wanted a nurse they were prity hard to find

ow that was about 20 years ago

Edited January 26, 2011 by smashed1

[*Ryno*]

Thanks so much for sharing your story, which hospital are we talking about here?

[everest]

sub cutanous (under the skin)drip in and not intraveinous IV or in the vein (a higher rate of fluids can be given IV). The average person needs 100ml per hour, more active 125, older 80, IV. They also need sugars or glucose but her drip was saline(salt water)and at 40ml/hr.

 

Such a tragically sad situation that ended in the passing of your friend. Can I just explain what this means though, as I understand your opinion is one of negativity.

 

A Subcutaneous drip (or the medical term/s; subcutaneous infusion, hypodermoclysis), is the injection of an isotonic or hypotonic solution (flushing cell/tissue or for stretching purposes such as those seen in paralysis), so in a way salty water for skin tissue benefits quick/continuous rehydration. The solution also contains electrolytes and nutrients essential for cell tissue life.

 

The proceedure is used to replace the loss or inadequate intake of water and salt during illness or surgery or after shock or haemorrhage. And is performed only when a patient is unable to take fluids intravenously, orally or rectally. The rate of absorption into the circulatory system is increased with the addition to the solution of the enzyme hyaluronidase. If you are interested google and read about the workings of body acid base balances. From your opinion it appears the nurses did what they could legally in delivering life sustaining/prolonging care.

 

There was very little care taken at all the injection would come and sometimes 45 minutes would pass then they would need to give her more, before moving her

 

..... and again your friend would have been given a bolus injection of opioid. The largest legal dose without murdering her. Just to make clear, medications are distributed throughout the body by travelling in your circulatory system passing through organs etc and hopefully you receive a theraputic effect. When the meds get to the liver (known as an expert filter in the body) the drug is broken down to what is called 'half life' and left to travel the circulatory system again when it returns for the 2nd time to the liver the 'half life' of the drug becomes half again and again is returned to the circulatory system this process goes round and round until there is nothing left of that drug in your body. Opioids have various theraputic onset times and as you were not specific in which opioid she was on I can only generalise. Your friend would have received a large dose of the drug, then a lapse time is waited out for effect, then your friend would have had a 'top up' dose, which will be a regular measure of drug to extend the life of that drug in her body so she is able to have a large and theraputic dose (that will hopefully last a while after being moved as her body copes with re-placement) without causing too much trauma to her body.

 

I wanted to explain because I am a Registered Nurse and I have experienced the grief families go through with loved ones in these circumstances. It truly is sad and you really do feel helpless and try to do everything you can to ease all the pain but at the end of the day nurses abide by a strict code of practice that helps regulate keeping you, your family and the nurse safe in medical practice. I am sorry for your loss.

 

Mrs E

[merl1n]

OK I would like to start off thanking everybody for their responses.

 

Mrs E,

Thank you for your information. It confirms information provided by the cancer council and I really like it when info is confirmed by others who have the knowledge

 

My biggest problem with this whole situation is that this person had wishes that were not followed, they were not legally binding and could be misinterpreted by others. In my view the level of care was questionable, but I'm just Joe Public

I understand the reasoning for the processes and my negativity is squarely focused on how these processess where instigated, the lack of information given and in some cases the arrogance shown. This lady in her last 2 days was moved to a palliative care unit in a different hospital. The respect the palliative care unit staff had shown towards everybody involved was astounding. They came to you, not having to go and find staff, they were there. As I stated '......who has the say (or the biggest mouth)......' well the family had one, somebody who ruled the roost and what they said went. Due to travel concerns they did not want to travel further and therefore did not want her moved to the other hospital. In hindsight the person concerned now regrets that decision.

 

I am by no means having a general snipe at nurses, not at all. I respect the job you do and I could never imagine myself doing it. But in this case, if family wasn't involved to monitor the care, how bad would it have gotten? I have a clear understanding of the legal requirments and codes of practise but again in this case I can see some short comings. The system can only be improved if people are aware of the shortcomings. If you don't know where the problem is then how can you fix it.

As for medications Fentanyl was primary.

I do however have a problem with Dr's and I suspect that many nurses have a similair contempt as I, ignorance and arrogance don't mix and Dr's seem to have a shitload of both. But that's Dr's not nurses.

 

*Ryno*, As stated earlier "..... I am not writing this down as ammunition against anyone....." so I'm sorry but I ain't giving you that ammunition either. A complaint has been drafted and if and when others feel OK with it all, a decision will be made on how they wish to proceed.

 

smashed1, It's bad when you hear shit like that, you start to question the care people recieve and word does get around about the standard of care. I ain't saying the staff were high (a bit of speed might have done them some good). But the level of care certainly has room for improvement.

 

Brick,Once she was moved the care was absolutely fantastic. The staff had the knowledge and were willing to share it, they answered questions. They spoke to family as family and not an interferance in their day and lets face it, in palliative care everybody is dying, it is not a joyous work environment. But the respect and dignity shown was great, fantastic, even brilliant in comparison.

 

Burnz, I agree. It has been a mongrel time. The funeral is tomorrow and things will move on from there.

 

Again thanks to you all for your responses (and allowing me to vent)

 

Merl1n

Edited January 26, 2011 by merl1n

[headhigh]

terrible to hear about that, but there is some very useful info in there.